I did not realize how happy I would be to have that tube out! I’ve been forcing myself to accept the tube and not dwell on it and haven’t even allowed myself to think about how it would feel to have her eating orally again. I have to tell you, it’s been just great.

To be able to hold her close while she’s having some milk from her cup or feed her some banana off of my finger and know that she is actually enjoying it, indescribable. I was thinking back to what a struggle nursing was, how I never felt like we were doing it “right”, how she had to be weaned so suddenly. In light of all the more serious life-threatening things we’ve dealt with, I know it should seem like a small thing. But to be able to sustain her body and nurture her the old-fashioned way is such a blessing.

And I think this change might be for good. The nutritionist cleared her, she’s taking her meds. The home care company is coming to pick up the pump. Her room now contains exactly one medical supply, her pulse oximeter. We’re a long way from the IV pole, oxygen compressor and bazillions of meds we used to have.

But wait, there’s more. Last Monday when we took the tube out, Ramona could say about 5 words. Now, just a week later, we count 36 words! My favorite is “ball”, which refers to anything round. That includes 11 animal sounds for those of you keeping score at home. Not included in that number are 14 signs she can do. We’ve just bought our first video camera and I’m going to try my best to get a good clip of her talking away. I’ll also try to get a clip of Simon being suprised, confused, serious and happy on command. He’s working up his character acting chops I guess.

Please pray that Ramona’s cardiology appointment will go well next Thursday. We are also going to be picking up the orthotics for her shoes soon, please pray that it will be uneventful as expected. Here’s a pic of a typical scenario at our house. It’s getting to be nap time and nobody wants to be put down, even for a minute. I call this “Toddler Sherpa”.

It’s a good day here, hope you’re having a good one too, Jane.
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